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When my youngest daughter was four months old, I was diagnosed with stage two breast cancer. With my newborn, I would go to chemo treatments followed by daily radiation. After radiation we would go to Gymboree because life needed to remain normal. It was a new normal, but just the same, it was my normal. I would then go and pick up my other three children from school and continue on with the day.
After surgery, chemo, and radiation, there was no evidence of cancer. The doctors thought we were home free. But as anyone with cancer knows, it can sometimes be a very tricky disease. After three and a half years of remission, we found that the cancer had returned. The cancer had spread to my liver and bones. I now had stage four metastatic cancer. The diagnosis and prognosis was confirmed with two doctors. That was eight years ago. There has been no evidence of disease for 2 years and 4 months! Yes, I have metastatic breast cancer but I am living with it. I have a wonderful full life with my husband and four kids. Three are now in college and the youngest is in 7th grade.
I have had 11 types of treatment and achieved success with some and failure with others. One thing I do know is that research is key to giving us all a fighting chance. The more treatments we have in our arsenal, the more chance for one to work. I also am not going to take my treatment lightly. I have blood work every 3 weeks and scans are done every three months. I fit cancer into my life. It works around my busy schedule. It is in the background of my mind but living is in the forefront of it. I believe in carpe diem every day. We were given this incredible blessing of life and I plan on living it for a very long time!
The holiday of Shavuot celebrates the giving of the Torah to the Jewish people at Mount Sinai. It is recorded that the people heard thunder and lightning, and clouds and smoke filled the air. The experience was overbearing to the senses. The children of Israel shook with fear. Ever have one of those days?
I imagine that those of you who have heard the words “You are BRCA positive,” or “You have cancer,” or “The cancer has come back,” experienced an overwhelming burden to your senses. Perhaps you, too, shook with fear. The ensuing thoughts that recur after hearing these words can be more agonizing than the realities. We are often overachievers when it comes to imagining worse case scenarios.
While we can’t stop intrusive thoughts from entering our lives, we can respond to the thoughts in a way that feels calming and empowering. When an intrusive thought comes my way, I imagine myself putting my arm around it, similar to the way that I would put my arm around someone’s shoulder, and I “say” to the thought: “I knew you were coming. I was expecting you. You can hang out, but I have things to do.” I find the more I welcome the thought, the less it overcomes me.
One woman in Sharsheret’s Embrace group for women living with advanced breast cancer shared, “I know that I feel more anxious when I’m waiting for test results or going to appointments. Those days I take the anxiety with me. All the days in between belong to me and the anxiety needs to find someone else to hang out with.” These wise words can calm the thunder and comfort the soul.
The New York Times recently ran an article by Susan Gubar, “Living With Cancer: The Good Patient Syndrome”, that questioned the importance of being a model patient. When Susan was first diagnosed, she was agreeable, nodding politely when meeting with her doctors. She worried that if she asked too many questions, she would be unintentionally neglected or harmed by her medical team.
One woman in Sharsheret’s Embrace group for women living with advanced cancer noted that each time she went to an oncologist appointment she felt unnoticed by the office staff and her doctor. One day, she went straight to her appointment from a Brit (circumcision). She was dressed up and wearing makeup. The office staff was quite complimentary and paid her a lot of attention. Her oncologist, who typically spoke to her while reading her file, engaged in eye contact and remarked how wonderful she looked. This woman decided that from then on, she would put on some lipstick and go to her appointments well-dressed. She told the group she felt as if she was now “dating” her oncologist - she wanted to be noticed.
Many women call Sharsheret with questions following a doctor’s appointment or scans – questions that are reasonable to ask their doctor during an appointment. Yet, they are afraid to ask these questions because they don’t want to come across as untrusting. When you have concerns, you may not pick up the phone and call the doctor because you “don’t want to bother them”. You worry about being labeled a “difficult patient”. At the end of the day, it’s your body, it’s your life. Don’t be afraid to speak up and advocate for yourself because if you don’t, something serious may go unnoticed.
As we prepare for the Passover holiday, we are reminded of how the Jewish people were obedient and compliant for fear of further harm at the hands of the Egyptians. Moses was also worried about his ability to stand up to Pharaoh on behalf of the Jewish people, worried that he would make an already bad situation worse. In reality, it was only when Moses spoke up and advocated for his people that he and the Jews were set free. What would have become of the Jewish people if Moses did not stand up for them? I’m adding this question to the already established Four Questions that will be recited at my Seder as a reminder to empower myself in the pursuit of health and well-being.
© 2014 Sharsheret: Your Jewish Community Facing Breast Cancer
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